SEATTLE, WASHINGTON & CHICAGO, ILLINOIS--This week, more
disability rights advocates weighed in on a controversial set of procedures
that a couple ordered for their daughter, who has physical and intellectual
disabilities, in an effort to keep her 'child size'.

The "growth attenuation" treatment, which the anonymous parents called
the "Ashley Treatment" on their weblog, involved using massive dosages of the
hormone estrogen to stunt the growth of the now 9-year-old girl, along with
surgery to remove her uterus and her breast tissue to keep her from starting
puberty.

The procedures took place over a 2 1/2 year period at Children's
Hospital and Regional Medical Center in Seattle, and were overseen by a medical
ethics panel through the University of Washington.

The treatment was revealed last October in the journal Archives of
Pediatrics and Adolescent Medicine, but did not receive much attention until
the parents published their own website on January 2, to defend the treatment
and to promote the procedure for parents of other "Pillow Children" -- those
with severe disabilities.

Many disability groups and individual advocates have issued public
statements expressing outrage, disgust and fear over the parents' treatment of
Ashley, the medical ethics board's refusal to stop the treatment, and the
public's general acceptance of the idea of that altering the size of a child
would be good for the child, the family, and society at large.

Some have called for federal and state investigations to determine
whether the treatment was ethical and legal.

Most also called for increased funding for community-based and in-home
supports for people with disabilities and their families, in light of the fact
that Ashley's parents said they worried they would not be able to care for her
at home if she grew up.

On Thursday, a group of about 25 activists, many in wheelchairs,
gathered at the national headquarters of the American Medical Association in
Chicago. The activists, organized by the Feminist Response in Disability
Activism, and including members of the grassroots disability rights groups
ADAPT and Not Dead Yet, were there to demand that the physicians association
condemn the practice. They also called for the AMA to support federal
legislation that would increase funding for community-based services.

Here are excerpts from some of the statements by disability groups:

"This is an issue of basically subjecting a child to drastic physical
alterations to fit the convenience of her caregivers," said Stephen Drake of
Not Dead Yet.

In a brief press statement, Self Advocates Becoming Empowered expressed
anger, sadness and outrage over what members considered a violation of Ashley's
human and civil rights: "SABE feels if Ashley did not have a disability this
never would have happened. Just because someone has a disability does not mean
they should be denied the basic human right to grow and mature as everyone
else."

The Board of Directors of the American Association on Intellectual and
Developmental Disabilities, formerly the American Association on Mental
Retardation, wrote: "We see an enormous potential for abuse here, and given the
well-documented history of mistreatment, neglect and devaluation of this
population, we are stunned and outraged by the very fact that the relative
merits of growth attenuation could, in 2006, be a topic for serious debate in
this forum."

"It is unethical and unacceptable to perform intrusive and invasive
medical procedures on a person or child with a disability simply to make the
person easier to care for," said Steven Taylor, director of Syracuse
University's Center on Human Policy.

In a written statement, Diane Richler, President of Inclusion
International, said: "Just last month we celebrated the adoption of the new
United Nations Convention on the Rights of Persons with a Disability . . .
Ashley's situation teaches us that our celebrations were premature."

In a letter to the editors of the Archives of Pediatrics and Adolescent
Medicine, TASH board president Lyle Romer wrote: "This is the denial of a
child's basic right as a human being to be free from the unwarranted and
unnecessary manipulation of their basic biological functions merely to satisfy
the needs of a third party . . . Children with severe developmental
disabilities are, first and foremost, human beings. The manipulation of a
child's physical development relegates those receiving such treatment to a less
than human category."

The Disability Rights Education and Defense Fund wrote: "'Benevolence'
and 'good intentions' have often had disastrous consequences for the disability
community. Throughout history, 'for their own good' has motivated and justified
discrimination against us."

"After decades of struggle to enshrine the human rights of people with
disabilities in law and policy and to challenge the overwhelming prejudice,
negative attitudes, and misperceptions that are widely held about people with
intellectual disabilities, this sad and puzzling episode must not mark a
turning point for those hard-won gains."